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After three weeks in hospital, two old and one new fracture, two bouts of shingles, four blood transfusions (3 red and 1 one platelet) and dodgy liver function – we are home at last. Anna is still severely neutropenic (open to infection) so she’s not allowed to go back to school yet. She will go into hospital on Wednesday to review her bloods – hopefully she can go back to school on Thursday. It’s just lovely to be sleeping back at home with both my children. As always, huge thanks to everybody who helped us to get through it.

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Anna’s shingles looked like they were beginning to clear up by the end of last week so she came off her aciclovir (anti-viral medication) and hyperhydration. Everything seemed okay but then over the weekend new spots appeared. So, on Monday she went back on the aciclovir. The anti-sickness medication continued and she’s back on hyperhydration (aciclovir can be quite toxic to the liver so they hyperhydrate to flush it through). It might be another five day course or longer – it depends on how quickly the rash starts to clear up.

Her gripper site (where the gripper needle plugs into the port-a-cath under her skin to give her medicines and fluids intravenously) has shingles around it and was inflamed, bleeding and oozing fluid. Her gripper was taken out for a short period to see if it could recover. If not, she would have needed a cannula in her hand. Neither reinserting the gripper into a sore and open wound or having a cannula put in were attractive options. However, she needed one of them done as otherwise she wouldn’t be able to have anything intravenously. so she was very brave and had the gripper put back in. I think it was very, very sore

Anna’s bones are so thin and weak that slight pressure exerted in the wrong place can cause a fracture. She woke up on Friday morning with a sore knee. The doctor examined it and she was sent to x-ray. Although initially there was no sign of a fracture, closer inspection revealed a small undisplaced fracture just above her knee in the growth plate. So although the cast on her arm was taken off on Friday, she was only cast free for about an hour. After a lot of discussion with the nursing team we now have a very detailed care plan in place specifying exactly how she is to be moved for toileting or going into her wheelchair, specifying how many people are involved and when the hoist is to be used.

The daily weekday routine includes a visit from the hospital and outreach teacher, a session with the physiotherapist, discussion with others such as the dietician/dentist, a visit from various doctors (oncology, orthopaedic, general registrar) as well as regular medication (she is currently on metoclopramide for sickness, Oramorph on request for pain, cholecalciferol – vitamin d, posaconazole – antifungal, aciclovir – anti-viral, potassium – blood levels are low) and observations. She is also still having an overnight feed through her NG tube as her appetite has not picked up.

Her red blood count is still low so she has had 2 blood transfusions in the last week. Her platelets are extremely low so she has had a platelet transfusion. She is neutropenic (her neutrophil count lower than one so she is unable to effectively fight infection). Her liver function has not been good but has not deteriorated further.

Despite all of the above, she is mostly smiling, laughing and singing. She’s in bed tonight with everything she needs – her new doll Emily (thank you Jim), piggy, sick bowl, NG tube with feed, IV tube with fluids and Disney princess blanket.